Never Have I Ever

Never have I ever written a blog while in the middle of an inflammatory flare up. I will actually just lock myself away into a dark hole of blankets & old X-Files episodes. It’s probably why there are such inconsistencies with my blog as far as posts. Social media posts are easy to do while sick. But to sit down and be thoughtful & articulate in my writing while battling my own body, was not something I thought would be entertaining or informative. So, never have I ever written a blog while in the middle of a flare up…until today.

Today I am writing to you after hours of fighting pain, urgency and fatigue that is harsher than it’s been in a while. I feel like I’ve been trampled by a baby elephant and now I’m back carrying him in my Ergobaby carrier! It’s such an interesting thing, describing my pain. I read y’alls emails, dm’s and comments. Then I hope to my resources to find you help. Forgetting that I am a patient myself. I suppose my body felt it was time to remind me that I am closer to Batman than I am to Superman. What’s interesting is that my mind automatically goes into self preservation, screaming at my body to suck it up. That this pain today is not as bad as the pain I felt a long time ago, and only slightly worse than the pain I felt yesterday. My mental health never wants to give my physical health the benefit of the doubt. I suppose I just never really want to accept that I am a sick person. Not because it makes me better than you, my wonderful readers and community friends. But because if I’m sick, how can I help you? If there is one thing you should know, if you haven’t figured it out, I don’t like being vulnerable. I don’t like being weak.  I don’t like having to depend on others. I don’t like not being in control of my own destiny. You’re probably saying to yourself, “Good luck with that IBD girl!” Yea, well, I don’t! I love my independence. That’s only been amplified as I grow older in age & disease. When I do slip into the cracks of flare ups, it hurts my soul & ego. I hide behind my brand sometimes and go radio silent when I don’t feel well. Why? Because I don’t like being sick. And I hate people feeling sorry for me.

That does nothing to help my work for patients and families. It isn’t very fair to choose to advocate only when I think I am healthy enough to be taken seriously. I can and should be taken seriously on days like today. When every little joint hurts and I have to set alarms to remind myself to eat because my appetite is gone. Sitting here, writing to you on a day when my energy level is about as high as a newborn, shows the world how chronic conditions impede on our lives, but our lives never stop. That the respect we are given as patients is far from the respect we deserve. I constantly try and remind patients and caregivers that they are stronger than they know. But I think I forget to listen to myself.

Today I got my butt kicked in the battle over my body in the inflammation war. And that is okay. It’s apart of living with a chronic condition. I’m no less a woman, mother, friend or advocate because of it. I’m just another human having a really messed up day. And maybe, just maybe I should stop hiding behind the hospital curtain on my bad days!

xo